Sunday, May 25, 2014

As I mentioned in my “May Days” blog entry three weeks ago
(5-4-14), Alex has been a little off this month. Suspecting that the
ridiculously high pollen counts make him slightly irritable, we have tried to
be especially patient and reassuring with him in recent weeks since he really
can’t help his behavior. Nonetheless, his current obsession with bath time and
his need to ask us repeatedly when he will take a bath every day has become
tedious. Even though we answer him every time he asks, he still acts anxious.
Since he responds better to verbal cues than spoken reminders, I have written
reminders for him so that he can look at the memo instead of asking us.
However, he carries this small slip of paper around the house with him and
doesn’t always remember where he has put it. This creates a whole new level of
anxiety because then he can’t find the paper with the time written on it and
insists that we help him find his note instead of just writing a new one.
Sometimes I think he deliberately “loses” the note just to watch us spring into
action, searching the house high and low until we find it.

Yesterday Alex again started with repetitively asking what
time he’d take a bath. After answering him several times and deciding that I
did not want to spend my Saturday hunting for his reminder note, I came up with
an idea. Having watched my middle school students (and a few of my colleagues
who have imitated this concept) write reminders on their hands, I decided that
I would write Alex’s bath time in the palm of his left hand. As I explained
what I was going to do, he looked askance at me, yet also seemed fascinated. As
I began writing 6:15 on his hand, I was reminded of the time several years ago
when I came home from work to discover he had written dozens of pi digits on
his foot and leg. When I asked him why he had done that, he nonchalantly
explained, “Couldn’t find paper.”

Although I was a little worried that he might think that
writing on himself was an acceptable alternative to writing on paper, “Desperate
times call for desperate measures.” After I finished writing the highly
anticipated time on his palm, he studied it and then asked me, “Is that a
tattoo?” Having seen athletes with tattoos, Alex is not a fan of them and
seemed concerned that I had permanently defaced his hand. I reassured him that
it was not a tattoo because the numbers were temporary since the ink would wash
off his hand when he did take his bath in the evening.

Throughout the day, we saw Alex checking his palm periodically
to remind himself when bath time would be.Not only thankful that this temporary tattoo reassured him
and kept him from asking us the same question over and over, I was also feeling
pretty proud of myself for coming up with a rather clever solution. At dinner,
we watched him check his left hand a few times to view his reminder, which
magically seemed to calm him. Still a bit concerned about the permanence of the
ink, he asked when the numbers would be gone. I reminded him that they would
wash off during his bath, which seemed to satisfy him. Then he asked us, “Is
that something to look forward to?” As much as he found those numbers on his
hand helpful, he was also looking forward to their disappearance, knowing that
the event he was anticipating all day had arrived. Thus, I realized that Alex
is even cleverer than I am because he’s figured out one of the best things in
life—looking forward to something special.

At this time of the year when young people celebrate the end
of the school year with proms, award ceremonies, and graduations, I feel a bit
wistful that Alex has missed out on these celebrations. However, I’m grateful
that he really doesn’t know what he’s missing and that he doesn’t fully
realize what autism has denied him in life. For him, bath time, a seemingly
ordinary event, is something to be anticipated and celebrated, a simple joy he
savors. Even looking at the time written on his hand that reminds him of this
upcoming event makes him happy. He doesn’t need a highly planned big
celebration; little things in life that others would take for granted bring him contentment.

His ability to find spontaneous joy was evident this week as
we watched the finales of the musical talent television shows The Voice and
American Idol. At one point during The Voice, he suddenly and eagerly told me,
“That’s my favorite song!” Although I don’t think he’d ever actually heard the
song before, somehow it sparked an enthusiasm in him that made him smile and
sway to the music. The next day, while we watched American Idol, he became
equally enthusiastic as he recognized a familiar Fleetwood Mac song, which made
him happily get up and dance. He had looked forward to the finales of these
shows, and he wasn’t disappointed.

While I sometimes feel bad that Alex doesn’t get to
experience the rites of passage most young people do, I realize that he also
escapes many of the disappointments. For him, a relaxing bath or hearing a song
he likes, familiar or not, makes him happier than going to a big celebration.
Moreover, he has learned one of the great secrets of life—anticipation can be
better than the actual event. As we wait with expectancy for Alex to make
progress, we need to remember that looking forward to the future makes the wait
easier. In the meantime, we should enjoy the seemingly small things that bring
us happiness, as Alex knows. Looking forward is a good thing; maybe I should
write that on my own hand.

“But if we look forward to something we don’t yet have, we
must wait patiently and confidently.” Romans 8:25

Sunday, May 18, 2014

This week, we had our annual meeting with Alex’s “team,” a
group of professionals whom we have chosen to work with him to help him reach
his potential, and we were very pleased with how well things went. In August
2012, he qualified for the state Medicaid waiver that provides services to
people with intellectual disabilities. In our home state of Indiana, parents
typically place their children on the waiver waiting list and know that they
will likely wait for many years—often more than ten years—before their children
qualify. Recently, changes in this program have made the process move along
more rapidly to ensure that those who need services get them instead of having
to wait for them. We were especially fortunate that Alex’s waiver application
moved along at lightning speed, thanks to a caring and persistent caseworker
who helped us with the process, my ability to organize paperwork efficiently,
and the grace of God who saw our needs. When he was approved for the waiver
within only three months of applying, we felt as though we had won the lottery
because this approval essentially means that he is eligible to receive
thousands of dollars of support each year of his life. Although we have always
somehow managed to provide the therapies Alex needed through our own financial
means, we were pleased to receive assistance and relieved to know that he will
be taken care of when we’re gone.

Part of the process of obtaining the waiver is learning the
alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA,
etc. Although these abbreviations are probably intended to make referring to
their concepts easier, they seem to create a wall between those who know them
and those who don’t. During our quarterly meetings with Alex’s team, Ed has
noted that he’s glad I understand the lingo, which make me feel as though I’ve
mastered some sort of secret handshake. For instance, Alex receives funding
from the Community Integration and Habilitation Waiver, more commonly known as
CIH. The intention of this program is to keep people out of institutions and in
their homes or residential placements within the community, such as group
homes. This program was formerly known as the DD Waiver, or the Developmental
Disabilities Waiver, but most autism parents knew it better as the Autism Waiver.
The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for
Individuals with Intellectual Disabilities; another is the FSW, or the Family
Supports Waiver. An intellectual disability is defined as one that begins
before age 22, is expected to continue indefinitely, impairs intellectual
functioning and at least three of six additional areas: self-care, language,
learning, mobility, self-direction, and independent living. To determine
services needed, the LOCA, or Level of Care Assessment evaluates how much
assistance the person needs with daily living skills. To qualify for the
ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as
Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD
Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant
supervision due to his autism. Of course, autism parents are used to all these
lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP,
and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn
language when they grow up hearing all the special needs jargon around them.

Aside from all the abbreviations and regulations, the waiver
program is intended, like special education, to provide needed services to help
the person overcome obstacles the disability brings. Just as the special
education concept of “least restrictive environment” works to integrate special
needs students in classrooms with typical students, the waiver is intended to
integrate people with intellectual disabilities in the community by providing
them with support to help them be as independent as possible. In special
education, the annual case review (ACR) brings together those providing
services for the child to assess progress and needs to determine what services
should be provided, and the annual waiver meeting functions in the same way.
For Alex, this means our family meets with his case manager who oversees his
services, prepares his annual state budget for those services, and acts as an
advocate, along with his behavioral therapist, music therapist, and a
representative from the company that provides respite care. As in a special
education annual meeting, basically everyone in the waiver meeting has an
opportunity to make comments as the case manager takes notes and prepares the
paperwork to guide service plans for the upcoming year, which requires several
signatures of the participants. Even though the meeting took over an hour and
required him to sign several electronic documents, Alex was remarkably patient
and pleasant the entire time, which shows the progress he has made. In past
quarterly meetings, he has complained of being tired or looked for ways to
escape, claiming he needed to get something to drink or use the bathroom. Other
than checking his watch from time to time, Alex seemed unfazed by having to sit
through the meeting, and we were proud of how well he handled himself.

Besides being quite pleased with Alex’s progress, as
evidenced by his behavior during the meeting and as reported by his therapists,
we were reminded how fortunate we are to have found excellent professionals to
work with him who genuinely care about him. The warmth of their interaction and
their positive comments about Alex made us grateful that we have the support we
need to help him develop the skills he needs in life. For years, we searched
for the right people to work with him and often found no one who was willing or
able to work with a child diagnosed with autism. Now we have a wonderful team who brings out
the best in Alex and supports us as we guide him to develop his skills toward
greater independence. After the struggles we have encountered in dealing with
the obstacles autism has presented, we finally have professionals who know how to
help, which comes as a great relief and a tremendous blessing. Knowing that God’s
hand has led these people to us, we believe that He will continue to oversee
Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.

“For He has not ignored or belittled the suffering of the
needy. He has not turned His back on them, but has listened to their cries for
help.” Psalm 22:24

Sunday, May 11, 2014

“Well, I’ve been afraid of changing ‘cause I’ve built my
life around you. But time makes you bolder, even children get older, and I’m
getting older, too.”—Stevie Nicks, “Landslide”

Dear Alex,

Twenty-three years ago, just before Mother’s Day, I found
out that you would be coming into the world in the not-too-distant future.
Well, I didn’t really know that it was you, but on an early spring morning, a home pregnancy test confirmed that my nearly lifelong dream to be a mom was coming true. In
those months as you grew in my womb, I imagined the person you would be and
thought of all the things I would teach you. In those blissfully naïve dreams,
I never stopped to think that autism would be part of our lives.

In the early days, as you hit your developmental milestones
on time, we reveled in your achievements and found those few quirks of yours
amusing. Sure, you seemed more interested in books than toys, but we were
certain that was because you were smarter than most kids your age. While I
thought we would have to teach you to love books, you seemed to have inherited
that interest from us as you preferred to pull our books off the shelves,
studying them intently, to looking at your own picture books. Nonetheless, you sat
patiently and happily as I read you Dr. Seuss and Little Golden Books and
children’s poetry and fairy tales. Soon we were to discover that we didn’t
need to teach you the written words because you had already figured out how to
decipher them yourself, an amazing feat for a three-year-old. Once again, you
had proven to us how clever you were, and we were pleased that you had
discovered the joy of reading.

While you didn’t say much, you always seemed to be observing
the world and taking in every small detail. After we were told you had autism,
we had an explanation for some of the things you did and didn’t do, such as
getting upset when the vacuum cleaner was turned on or why you didn’t point to
things, but that label didn’t really change who you were, an easygoing obedient
child. Basically, you were the happiest kid I had ever met in my life, and we
were going to do everything we could to make sure you stayed that way.

When we decided to home school you, we wanted to provide
you with an education that would help you succeed, and we thought that teaching
you one-on-one was the best way to do that. Also, we wanted to protect you from
teachers who wouldn’t try to understand you and from kids who would be mean to
you. What we didn’t realize was how much you would teach us. While we taught
you the traditional studies of math, science, social studies, and English, we
also shared our interests in music, cooking, and sports, hoping to make you
well-rounded. Most importantly, we wanted you to learn faith and kindness, and
you took to these lessons well, making us proud. Despite frustrations that your
fine motor delays made things “too hard for little hands,” as you’d tell us,
you kept plugging away. Even though I like to think you inherited that tenacity
from me, I’ve come to realize that you possess even greater determination, and
that inspires me to keep going when I think I cannot.

Because you’ve shared your interests and the research you’ve
gathered from books and the internet, I’ve learned about the stock market,
NASCAR, astronomy, meteorology, and pi, none of which I would have cared much
about, had it not been for the enthusiasm you have conveyed. When you talk
about these beloved topics, your eyes light up, your face breaks into a smile
that reveals those irresistible dimples, and you draw us into the sheer delight
you feel. Sometimes you can barely contain your enthusiasm, and you don’t just
walk away after the conversation; you “happy hop” away, a combination of
skipping and galloping that shows that you’re still that happy little boy
inside a young man’s body.

When you and I walk together in public places, I’m reminded
that you are fully grown as you tower over me, but sometimes you slip into
little boy mode as you reach for my hand. I’m never sure whether this is
because you need reassurance that I’m there for you or that you are reassuring
me that you are there for me. One of the good things about the way our life has
gone is that you don’t seem to mind that you have led a sheltered life because
you have needed protection from the world. You’ve never wasted time worrying about other people’s opinions of you, and
your life has been more content for that. However, nothing makes us prouder
than when people tell us that you have nice manners or are so sweet or have a
great laugh or are very smart. Even though we know all these things, we always
appreciate when someone else notices and tells us. You, on the other hand, just
go on your merry way, not caring what anyone thinks of you.

Now that you are a young adult, we hope that we have taught
you most of the things you will need in life, but we realize that we must help
you to become more independent. While it’s easier for us to do things for you,
we want you to be able to do things on your own. If we stand back and let you
struggle, know that we believe you can do it yourself, and we’ll be right
behind you cheering you on and lending a hand when you need it. As I have been
your teacher, you have been mine, too—in fact, you have been the greatest teacher
in my life. You have helped me develop my weakest quality—patience, taught me
the value of hope, strengthened my faith, and made me love more deeply than I
thought was possible. From the challenges that tested me and your childlike
trust and innocence, I have become better, stronger, and happier, thanks to you.
What mother could ask any more of her child? Thank you, my precious boy, for
the gift you truly are.

Love always,

Mommy

“Yes, You have been with me from birth; from my mother’s womb
You have cared for me. No wonder I am always praising You!” Psalm 71:6

Sunday, May 4, 2014

Poet T.S. Eliot once wrote, “April is the cruellest [sic]
month,” but I’d have to go with May instead. For teachers like me, the last
month of school involves giving standardized tests and trying madly to finish
teaching curriculum to students whose minds have understandably drifted to
imminent summer vacation. With the stress of trying to accomplish too much in
not enough time, colleagues become annoyed with those who don’t pull their
share, don’t follow the rules, and don’t seem to care. Knowing that Alex is
very attuned to my emotions, I try to keep any frustrations from work hidden
from him, but I suspect that he senses my agitation at times. Also, every
spring he seems to be a bit off, probably due to pollen in the air and
atmospheric changes that occur in late spring. Needless to say, May brings
challenges to both of us.

This week, the first of the month of May, Alex has been a little off. Although he doesn’t
complain of any physical symptoms or show any signs of illness, he has been somewhat lethargic, preferring reclining to recreation. Usually when I offer to take
him grocery shopping with me, he leaps up, ready to go because he likes going
to the store. However, this week when I have suggested that we go shopping, he
has suggested instead, “Daddy can go.” While I’d like to think that Alex is
concerned about my doing too much and trying to shift some responsibility to
Ed, I think he just prefers to stay home this week. If, indeed, pollen is an issue, he is showing wisdom to stay
indoors to avoid exposure to things in the air that bother him.

Despite not being one hundred percent, he had terrific
sessions with his therapists this week. On Tuesday, his behavioral therapist heartily
praised his work, saying he had a “wonderful” session, and on Thursday, his
music therapist also told me that he had done very well. Nonetheless, Alex
didn’t want to go anyplace this week and made excuses for not going whenever
suggestions were made about going places. Yet, he seemed to be in a fairly good
mood most of the time and revealed progress in unusual ways. One day, he
kiddingly told Ed something implausible, and when Ed asked him if he was
joking, Alex responded, “No, that’s hyperbole!” (This is what happens to
children of English teachers; they use a literary term for exaggeration.) This
week he also suddenly mastered using the toilet standing up instead of sitting,
as he has insisted upon for all these years, and he seemed quite proud of
himself for this accomplishment. Since he has been doing so well in various
areas lately, we didn’t give his reluctance to go places much thought.

On Friday, we were to meet his behavioral therapist at
Target, one of his favorite places to shop. After a quick lunch at the Target
Café, we planned to walk around the store so that he could shop and practice
his social skills at the same time. These weekly outings have been quite
helpful to his development of practical skills and applying what he has learned
during therapy sessions. As we ate lunch, Alex didn’t seem as enthusiastic
about eating as he usually is, and he didn’t seem as excited about shopping at
Target as he normally is. Nonetheless, he half-heartedly went along with the
plans. When we decided to look for birthday cards for his cousins, our plans
were deterred a bit because we found a woman had parked her shopping cart in
the middle of the aisle and seemed oblivious that she was needlessly blocking
the path. When Alex’s therapist sweetly said, “Excuse me,” the woman glared and
barely moved her cart. As I could feel my annoyance rising, I fought my desire
to tell her that she could benefit from learning some of the social skills my
kid with autism practiced. Whether Alex picked up on my irritation or felt his
own with the rude woman, he began to set his jaw in a way that I recognized as
a signal he had had enough.

As I asked him what was wrong and tried to remove him from
the aisle quickly, he told me that he was tired of waiting and flung his hand
toward me. Putting to use my limited tae kwon do skills, I blocked his hand so
that he didn’t make contact with me. Unfortunately, I didn’t grab his other
hand in time, and he scratched his therapist in a rapid movement of
frustration. Taking him by the arm, I quickly found a place where he could sit
and calm down, and he cooperated with his therapist and me by following our
directions. Fortunately, he de-escalated very quickly and apologized;
unfortunately, his unacceptable behavior would have to be reported for his
files. For all the weeks his behavior has been excellent, I knew that one
moment would sadly mar his record of good behavior. As Ed noted in an analogy
to the game Chutes and Ladders, for all the ladders Alex has been climbing with
good choices and good progress, he had fallen down a chute in one moment of
upset. Whether it was pollen, picking up on my work stress, or the annoyance with a rude shopper, Alex reacted in a socially unacceptable manner for one moment.

Thankfully, his therapist reacted with understanding and
compassion, and she focused upon the positive aspects of Alex’s compliance
immediately after the incident and his ability to calm down quickly. Having
dealt with much longer and much more aggressive meltdowns with Alex in the
past, I knew that this showed how far he has come. Also, his therapist noted
that his behavior not only revealed progress in dealing with issues but also
the clear need for continued therapy so that Alex doesn’t react in negative
ways when he becomes overwhelmed. While he and I both felt bad about what had
happened, she assured us that she was fine and that she understood he is still
learning how to cope in a variety of situations.

Last night, Alex suddenly said to me, “I was worried.”
Because he rarely initiates discussions about his feelings, I was surprised
by this out-of-the-blue admission. Moreover, his issues with language make
expressing himself rather difficult, especially when he is upset or when he is talking about abstract ideas. Although I wanted to press him to find out what was
bothering him, I somehow sensed that he had told me all he could, and I respected
his confession on its face value. As I tried to reassure him and explain that he
needed to use his words to tell us when he is worried instead of using his
hands, he seemed to understand. Maybe he’s ready to climb some more ladders this
week; I hope so.

“Give all your worries and cares to God, for He cares about
you.” I Peter 5:7

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.